Which advice would you give to someone who has just been diagnosed with Lichen Sclerosus?

Sluit je aan bij een patiëntenvereniging ! Stichting Lichen Sclerosus biedt veel mogelijkheden voor contact met lotgenoten en geeft de nieuwste informatie. Een besloten forum, Facebookgroepen voor vrouwen, mannen en ouders van kinderen met LS.

I don't know

Find a knowledgeable doctor in LS.

Don't panic, stress is also a trigger. Learn from the people who know this disease and get involved in a support group, as these people truely understand. Don't put your head in the sand and hope it will go away as it won't.
Change the things in your life - diet etc that you need to.

Three words, Research, research, research.
Do Not let anyone tell you that it is a "nuisance" condition. Do not let anyone diminish the shock of finding out you have an incurable barely recognized or treated disease. If you know more about your condition than your Doctor or nurse it's time to change providers. Do not let anyone minimize or marginalize you or your symptoms.
There are many women in the world with amazing support groups filled with information, advice and an understanding ear, visit them often but when it becomes to much don't be afraid to take a step back for a few months. Many times you only read the horror stories and you don't want to let it get to you. great news isn't written about as often as people needing support through a difficult time.

You are not alone. Find yourself a support group online with people that know exactly how you feel. Find a doctor you trust and is willing to talk to you. You can get through this.

Please do not panic. Read as much about this disease that you can. Try different treatments and see what works for you. Find other women with LS and compare notes.

Research and join a support group.

Do a lot of research and become an expert and your own advocate. There are some great Facebook groups to find information from others who are suffering from Lichen Sclerosus.

Try not to google too much as this tends to give worse case scenario's. It's a lot to cone to terms with and for manybit can take years. Many women feel alone, depressed, less of a woman and scared of the cancer risk. The cancer risk is around 5% and generally develops when LS has been left untreated for years. Join support groups on Facebook and always speak with your medical professional. There are awareness pages that can also help and have a dedicated website.

Follow treatment plan
Create dialogue with your partner

Have a frank discussion with a knowledgeable doctor or NP. Read the net and remember that most of what you read is from unhappy and miserable people. Not everyone posts their positive days. Discuss your concerns if you have any about the treatment your physician recommends, Understand this is a new adventure, not necessarily a pleasant one but manageable
Absolutes are: do self exams at least monthly
keep a log of changes to your anatomy, even include photos kept in a secure file.
If any changes occur consult your doctor immediately
take your photos to the doctor.
eat healthy
enjoy a healthy life style